What dreams may come

On 11 December, 2013, the only Julia that I had ever known walked out the door forever.

It’s only natural of course, with a diagnosis of terminal cancer, your innocence is ripped from you with such brutality, you can never return to the same place you were.

I have written before about the concept of joy. No one can walk around in this state of heart bursting all the time, but it was something I needed to feel sometimes, something that fed me. Knowing that you have met the love of your life – Joy. The birth of each new baby, to make our family bigger, richer – Joy. The sheer, almost thoughtless taking for granted that there will be something else around the corner that will open your heart a bit more. Yes, I needed that.

So, how do you cope with the concept of knowing that not only will you never feel joy again, but that you will never actually even be HAPPY again?

And so I started to make bargains. When my new friend you never want to have, the oncologist told me that my cancer was so advanced that he was not even sure it was treatable, but told me to take the two week Christmas holidays that we had booked for the family and come back and start treatment, I made my first one. Two weeks. I had that two weeks to be happy, to still be a family – I’d start with that. Reducing my life to tiny pockets of time.

I remember when we ran through the chemos. For me, there were three “lines”. They almost formed pockets of time in themselves. The first was pretty much always going to be the best. The best potential for shrinkage, the longest period of time before it stopped “working” (if it worked at all). The second line, maybe a bit more shrinkage, stability for a while, probably shorter in it’s effectiveness. Once he started talking about the third line treatment I started to glaze over. A short acting drug that might extend my life for a few months, with what sounded like horrific side effects, like an acne rash all over your body, and peeling, cracking skin. I doubted I would even try that one.

A scan was ordered after 6 treatments, to see if the chemo was working. Amazingly, it had, and quite dramatically. Enough for a liver surgeon to say that he thought he had a 70% chance of removing all the tumours from my liver, and potentially curing me – my only chance of a cure.

It was February, 2014, and surgery was booked for May. My goodness, now THAT was a pocket of time! The deepest ache was always to live “normally”, so I made another bargain. From February to May, that was what I was going to do, I could give us all that.

I rallied even though things did not run smoothly. A near fatal bowel obstruction meant that I had to have life saving surgery in March. This changed the order of things, liver surgery was cancelled, and they decided to remove the primary bowel tumour first, in August. Still, I could do this, we will still on track, I still had my chance of a cure. More living “normally” around recoveries from operations.

In many ways, this was an incredible year. I stripped away all that didn’t matter in life, with a frenzy that only a drastic situation like this can bring. I stopped worrying about what people thought about ME, which is something that had consumed me most of my life. It was the single most freeing thing that I had ever done – to learn to really like myself, after a life time of self-loathing. I was stuck, often, by how so many things were better than they had ever been, but with the malevolent and bitter aftertaste of a terminal diagnosis.

In the November, the liver surgeon told me that he thought that the amount of residual liver that I would be left with after the surgery would be quite dangerous, being on the borderline of survivabilty. However, he wasn’t worried, he just wanted to perform a procedure to block some blood supply to the “good” side of my liver, make it grow larger, make the surgery safer. Something he did very commonly, and it worked in over 90% of patients.

It didn’t work for me. Less than 48 hours before my life saving surgery, it was cancelled. He had something else up his sleeve though, something he hadn’t performed before for this particular reason, but he thought it would work.

It didn’t. Nothing could have prepared Gaz and I to sit there and hear him tell us that due to my sheer determination he would still offer me the liver resection, but now it carried with it a 50% chance of death (and a slow, agonising death over 6 or so weeks, not a going out in a blaze of glory on the operating table). And, worse still, if I was in the “good” 50%, his chances of actually curing me were, he thought, now in about the 1 to 2%.

Very much against the advice of the surgeon and the oncologist, I decided to have the surgery. The surgeon insisted that before he would perform it, I had to ask my oncologist how long he thought I would live, so we could really be sure it was worth taking such a massive risk with what time I might have left. I didn’t want to do this, I never asked for timelines, I didn’t want to live against a clock. But I had to.

The next week Gaz and my brother and sister sat and listened to the oncologist talk in a period of months – maybe 6 to 9. If I was lucky. So, I returned to the surgeon, and signed on the dotted line. Surgery was booked for the end of February.

I remember so clearly my response when the surgeon asked me how I could bear to give up even that time. Time to make memories with my family – this surgery could, and he thought probably would, cost me all that. Then he said to me that the surgery was so major it was a minimum of three months to recover any sort of quality of life at all, and the high likelihood was that I would arrive at that appointment three months later to find that the cancer was ALREADY BACK.

I told him that was EXACTLY why. Because there was a small chance it wouldn’t be. ALL that I had wanted in the preceeding 12 and a bit months was just a few days, hours, minutes, seconds, where I MIGHT NOT DIE. Where I MIGHT NOT HAVE CANCER. Where I could exhale for a little while. Where innocence might not be lost forever. I was more than willing to struggle, to suffer pain, for that whole three months for a few minutes where all the air left my lungs, and I could fill them again.

But it wasn’t to be. The surgeon shined a special light over my liver on operation day, before he cut me open fully, and the cancer was revealed to be too advanced. And with that, my chance of ever exhaling like that again, of rediscovering that innocence lost, was gone forever.

And with that, I had to accept that I would now always be “living like I was dying”. It was the single hardest thing that I have ever had to do, but for my babies, for Gaz, for all of those who loved me, I had to try and put that 6 to 9 month timeline behind me. I made my motto “As much as I can, for as long as I can”.

Amazingly, 2015 had some things in store for me too! A BOOK! My little blog was being made into a book – something many dream of their whole lives, but few achieve. But my timeline was being eaten away, my chemo regime was becoming less effective, and my body was declining right on schedule. I desperately wanted my book to be published while I was still alive to enjoy it, so the publishers moved very fast and my book was released at the beginning of September.

At the same time, we found that during a QLD holiday in August, my chemo regime had stopped working altogether, and my cancer was advancing rapidly. My oncologist said he desperately wanted me to be able to stay off chemo long enough to enjoy the fun that went with the launch of my book, the book launches, media appearances, the whole exhilarating box and dice that goes with these things. It was only for a couple of intense weeks, and we decided that it was safe for me to go chemo free for those, before he tweaked the chemo routine, and I was back on the treadmill again.

More bargains. Just let me have this time. Gosh I was getting good at embracing these small pockets. And, largely the universe was kind to me, my pain increased, my fatigue increased, but I was filled with adreneline, and I had the time of my life during those few weeks.

A return to the chemo chair, while not doing anything ground breaking, was holding things reasonably steady, when my oncologist shocked me in December (the very month that I was told I would definitely be dead, given my original best case scenario of 2 years) by proposing a course of two different radiation treatments on my liver and lungs that might hold things steady for a year or two! Some people had had even longer!

This was my chance! The chance to live that dream again, where I knew that I couldn’t be cured, but didn’t have anything imminently threatening my life! I felt so sure it would work.

We started with the radiation on my liver – beads placed directly inside my liver, to reside next to the tumours, hopefully to melt them away. As intoxicating as this chance was, I think this is when I really started to become a ghost of myself. The fatigue so all consuming, the sickness so constant, the fight too hard, too long.

It was worth it when it worked! Tests showed my cancer markers in my blood had dropped 100’s, my liver function was returning to normal. I would have partied like it was 1999, if only I had the energy. Party I didn’t, but for a precious, short time, live like I was NOT dying, I did. The most precious gift ever.

Once again, it wasn’t meant to be. Just as we were about to embark on the next stage of this treatment, tests showed that my liver was turning on itself again. Two precious months was all I had had to “enjoy” the fact that I might have a life again.

Things stayed the same for a short while, and then I got very sick. Cancer grew over my bile ducts, with a new vigour and aggressiveness that it had never had before. I itched and burned, and bruised, I vomited, I turned yellow – and I knew it was over. I had a couple of surgeries to try to turn it around, but timelines started to be discussed in mere weeks. The hope I had felt a couple of months before, to the prospect of weeks to say goodbye to my babies, to my Gaz – it was staggeringly swift and cruel.

And what did I have, to fight? One small glimmer. That “third line” treatment. The one with the rash, and the horrific side effects. The one that possibly allowed you eke out a couple of months of life. I decided to try it, for my babies. The time left was for them, there was still so much to say, to explain. Maybe I could prepare them, just a little bit, for life without me not to be so harsh.

In the meantime, I went to palliative care. I was in too much pain to get any quality of life out of this treatment, even if it did work. A beautiful doctor got me out of pain, and I spent 8 peaceful days in the unit, gaining a bit of mental strength for what was ahead, having sleepovers with my babies, having long talks with those who meant a lot. It was a gentle time, but one where it was acknowledged that I had moved into the next phase – the one of dying.

And so, I went home, maybe for the final time, pain free, and as ready as I ever could be to face what was coming. I remember the first day I had to chance my weekly morphine patch after I left the hospice. Pain returned with a rage the night before, and after picking up the script the next day, I must have made a comical scene, actually stripping off my clothes like a maniac outside my front door, so I could rip off the old patches and put on the new. I wasn’t sure if I had become an opiate addict almost overnight, or the pain was still too great to cope with, but it didn’t seem to matter.

Then something strange began to happen. The following week, I seemed to need that morphine patch change quite a bit less. I remarked to Gaz that with my level of problems, even a high dose of morphine like I was on should not, in my opinion be enough to not only totally overcome the pain, but make me feel so much better. I literally felt better every day, not just pain wise, but within myself. We figured the rash drug must be working to some degree at least, maybe keeping things stable, and we were comforted by the fact that I probably had a few months quality time left, time to make more memories.

Last Wednesday, we returned to my oncologists office, to find out the results of the first scan since the new treatment had started. Now, I knew I felt good of course, but self- preservation had kicked in a few days earlier. The one where you tell yourself it can’t possibly be good, and prepare yourself for the worst. And of course, the “worst” in this case could not have been more dire – a final treatment that was not working. Weeks afterall, or maybe a couple of months in decline.

As I wandered into the office ahead of my oncologist, and he walked in behind me, I could hear him saying the words…”now Julia, I know you think you sometimes know the results of your scans before I tell you…”….and at that point I accidentally kicked the edge of his table. I decided that childish petulance suited the situation quite well, so I charged over the top of him…”nup, wouldn’t have a clue”. Then I realised that he was really warming to his subject. Huge smiles, thumbs up, “you are not going to BELIEVE this”. It’s always the same for me. When I hear the relief in his voice, a single tear slips down my cheek. It slipped down. He asked me if I wanted him to talk in numbers and I said yeah, so he sat at the computer and started to talk of liver tumours declining by massive centimetres…nearly half of their volume. This pissy little drug? The one that I wasn’t even going to try. The one that I Maligned long and hard for it’s side effects and lack of longevity. Well, it seems in a very small percentage of people, it is something akin to a miracle drug. And it seems I am one of them.

There isn’t a road map for this. The three or four months it usually gives, well, that “could” happen. It could go on the turn. But as he wrote scan requests and blood test slips, and told me to see him in SIX WEEKS (never gone more than 3), and have a scan in THREE MONTHS, he said this wasn’t going happen. I’ve only had six treatments, there is still room for lots more shrinkage. People can go on for years like this. And I’m going to be one them, I am. Because I have got that pocket that I dreamed of. The one where I know I am still going to die of this disease, but I don’t know when.

On the way to the appointment, I was thinking ahead about how we all still had to eat, and me making anything wasn’t on the cards. Manically, I thought about how we would go for pizza if it was shit, but if by chance I got some “good” news, even if I was stable, then I was going to Ginseng for Chinese. I love Chinese, but we never go, as the children are not fans.

So, we got home, and gathered them up, and said that we were off to Ginseng. Groans all round, but they could see that we were festive, and they were happy to run with that. As we gathered around the table, I started to tell them a story, about when I was a child, and there was anything to celebrate, then my mum and dad always took for me for Chinese. Then, my face lit up – yes, this was joy, with the delight of being able to tell them another story, share another precious family memory. All the while, having a chance to make more of our own. Indi warmed to the story, and wanted to know what I ordered. I said I always had chicken chow mein.

Georgia tore up the tablecloth.

Tana said mum, I think we should have a girlie day and go have massages.

Indi ordered chicken chow mein, and came around the table frequently to pat me and talk about tv shows and snuggles.

Dakota asked me if there was any chance I could help her write a paradox poem, and I said I could. She seemed surprised, but delighted.

The owner of the restaurant glared at Gaz frequently for always staring at his mobile phone when she was asking him what he wanted to eat. We all laughed at this.

And just like that, the Watson’s wandered into the land of innocence lost, and took a little of it back.

On the way home, Tana said “you know what mum, I think we are just going to have fun”.

31 Comments on “What dreams may come”

hi Julia,i have been following your blog since i was diagnosed with stage 4 bowel cancer last year (aged 42) liver was too far advanced with mets for anything to be done with them and had a few small lung mets. it has now spread to my peritoneal lining and left ovary, atm everything seem to be stable except that bitch of an ovary in 4months it has gone from non exsistant to 15cm….. if you don’t mind me asking what is the name of your third line treatment drug. I am also about to start third line treatment with regorafenib, sadly its the only drug left available to me as my kras is mutated not wild and it is not on the pbs ($4077 per month).

We have raised enough for 2 cycles which is enough to see if it will work or not……I have been very lucky in the way that I’ve had no or very little side effects from all my previous chemo but this one is meant to be very harsh and if it does work will only give me an extra 6 weeks on top of no chemo at all (if that makes sense). But any extra time to spend with my husband and 5 kids is worth it. My oncologist being the ray of sunshine that he is (NOT) says and I quote I’d be very surprised if you’re here this time next year, And because I’m such a stubborn bitch I plan to prove him wrong 😊

Asolutely the most moving,inspirational story i have ever read,.
I was having a bad day today,got to see the awful scarr from my carcinoma surgery on wednesday,aanniversary of 1st meeting with someone i cared very much about (he decided a month again he wanted to be on his own again).And my sons 22 nd wedding anniversary,i was to caught up in my own misery to remember,or maybe Chemo brain.lol.
My heart just bleeds for you and your beautiful family and i admire your strength.
My journey has been nothing compared to you and im so happy to have read your story.
Keep fighting and prove them all wrong.
May my angles and god look over you.xxxx

Julia
Have been following your story since I was diagnosed July 2015 with breast cancer a teacher from my boys school gave me your book .I thought it was very real and a lot of what I read was how I felt. I hope things keep going well for you, Its hard to put into words what I feel so I admire you for being able to do that. Will be hoping and praying that I keep reading good things for you. Your girls are beautiful and worth the fight. All the best

So so happy for you Julia on this unexpected good news. You are such a tough and inspirational lady. Strange when you hope for good news but brace yourself for disappointing news and feel extremely thankful that you have more time to make memories with family and friends. So far I am enjoying good health, except for the constant fatigue and my chemo tablets are keeping things at bay with tumours in lungs and when they stop doing their thing, my Oncologist wants me to join trials with a promising drug for patients in my position.
Sending you love and warm hugs lovely lady. 💕

Hey Julia. You are an extraordinary woman. Thank you for writing this.

I love what Tana said and I’m wishing you all of that fun. And pockets of joy along the way. The amazing thing about joy is that we can’t plan it, it just happens. Usually when we least expect it to. Maybe that’s what makes it joy.

Amazing Julia, I was introduced to you by gorgeous Edenland. In my heart I’m sewing you a great big “pocket”, as high, wide and deep enough to last for as long as you need. I hope you find it soft as silk, strong as chainmail and as versatile as hemp to ease your pain, make your clothes comfortable and possibly just for recreation! You are quite awesome and I wish you miracles (even though I don’t believe in them). HUGE pocket for you young lady! xxx

Wow – what an incredible journey you’ve been on! I hope & pray your prognosis continues to be positive so you can have many more joy filled days. A beautiful friend is nearing the end of her journey curtesy of stage four cancer. We live in hope for her miracle. She has a gorgeous husband & baby boy just shy of two years old which is gut wrenching xx

Hi Julia,
What wonderful news. I am so relieved that this little drug has given you some reprieve. May the pockets of joy continue to pop up every which way, and there be so many more trips our for Chicken Chowmein from here on. Love following your story. Your writing is beautiful. Thinking of you and your family.
Kate

Julia,
I hope that you, your fairies & your fella are having fun.
Whilst I do not love that you are all going through this, I love your insight & sharing. I find myself constantly reminded of things my mum would say & do whilst reading your journals.
Thank you for all that you have bought to so many people lives in sharing your story.
Have Fun xxxx

Julia I was absolutely delighted to sit next to you at the Bupa blog awards tonight, even more so now knowing what an achievement that is. A little bit of me changed tonight, seeing your hope and joy. I hope you see much more of both.

From one of your UK fans – glad to hear things have improved for you lately. Long may it continue!

In the UK they have recently (last month) approved a new drug called LONSURF for patients who have failed on the main two treatments. I don’t know the status in Australia but perhaps it is in the pipeline there as well. Perhaps something to discuss with your oncologist. I am also a stage 4 patient on Cetuximab / FOLFIRI. Seen good results so far and hoping it lasts. I don’t care about the rash of it means I can be with my lovely family.

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